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Thursday, July 26, 2012

That is my name.
I have known why it is my name since I was a small child. It is etched within my mind beside my
childhood prayer: “Now I lay me down to sleep, I pray thee Lord, My soul to
keep. If I should die before I
wake… “

I am named after my great Aunt Regina Roggow. She died in 1906 when she was only 5
years old. She shares a grave with
her little brother Erwin who was only three. They died of Scarlett Fever. If you are parent, you might have gotten those little slips
of paper that warn of an instance of strep throat in the classroom. After getting the note you probably
watched your child more closely and perhaps made a trip to your local doctor to
pick up some antibiotics.

My great grandparents did not pick up antibiotics; there
were none to be had, instead they picked out a headstone.

When I was a child, I would visit this small grave on the
wind swept prairie of Oklahoma. I
would grasp plastic grave flowers in my pudgy fist. I would step carefully through stickers and cockleburs that
would catch upon my ankle socks. I
would walk towards the back of the cemetery to the children’s section. I want you to think about that. The children’s section. So many children died back then they
had their own space. Here the
tombstones were smaller and often depicted lambs. I would kneel at Regina’s grave and press the flower deep
into the red dirt. I would cry for
a child I had never met.

When began I visiting Regina’s grave she had already been
dead for over 70 years. It was
hard to read her name on the weathered granite. I would trace the indentations with my little finger. The years passed. I grew and Regina’s
name faded. Recently my Aunt
Minnie asked the folks at Pellow Monument Works in Enid Oklahoma if they could
do anything to improve the text on the grave monument. Aunt Minnie wanted the visitors
to be able read the stone. The
Pellow team said they could. The
painted it with black lithochrome and then re-sanded the granite to its
original tone.

Now its message is crisp and clear. Regina has monument on
the prairie in Oklahoma. Now due
to this post, she will have one online as well.

When I speak, I speak for children like Regina and I speak
for men like my late husband Fred Holliday. I, like many who work within patient advocacy, want to make
sure our loved ones did not die in vain.
We want the world to remember them, and through telling their stories
effect great and positive change.

Sometimes due to our personal sorrow or anger our messages
are not clear or can be off-putting.
Sometimes due to inexperience we will say things that are considered
rude within the world of social media.

I am writing this post to address the etiquette and protocol
within social media as it applies to advocates and the communities to which
they post.

Advocating from sixth
stage of grief. You probably know about the five stages
of grief: denial, anger, bargaining, depression and acceptance. A good friend of mine named Trisha
Torrey wrote about the sixth stage of grief calling it Proactive Survivorship. Proactive survivors
have gone through the five stages of grief and want to help others. They still remember their sorrow and
anger, but they do not let these emotions control their advocacy or cloud their
message. They have replaced blame
with hope and their story is not tragedy; it is triumph. These advocates are often the most
effective.

Some advocates are still actively experiencing anger and
depression. It is hard for them to
hear the joy and success of their counterparts. Often these two groups will be at odds with each other. Please take a deep breath when you post
to other members of the social media community. We all have experienced suffering; we all have a reason for
being here. We may just be at
different stages of the journey.

The smiley face is
your friend. In tweets or in facebook
comments there is not a lot of time for nuance. If you say something quickly and think it can be taken in a
negative way the simple emoticon J
can do much to eliminate ruffled feathers.

Don’t spam your
friends. When you have a new link or post that you are excited about do not
cut and paste it repeatedly in every forum or group. Sometimes the post is of extreme importance with a limited
window of action ie; public comment period is almost over, tweetchat is tonight
or a reporter is looking for content relevant to a dead lining story. We will
understand a deluge then. Rather than over-posting, posting it where it is most
appropriate, then tailoring your message to the group will help with
spread. If you become known as an
advocate that spams multiple groups with the same post, your messages may
become synonymous to white noise and disregarded.

Everything in
Moderation. Do not attack a advocate personally for their thoughts on a
subject. We are all working toward
a common cause of improving the patient experience. Try to be civil in your
debate. If you are concerned about
comments directed to you in a public forum, contact the poster privately if possible. If that is not possible, contact the
moderator or admin. They can
remove inappropriate comments.
Know that certain types of comments can result in an advocate being blocked
from a site. It is important that
list serves and facebook groups be safe places where people feel comfortable
speaking truthfully and with respect.
Group membership will decline if the space feels like the Wild West. I have seen too many groups loose
valuable membership because of poor self-moderation of comments.

Know your social
media platform

Twitter is a caused based platform. In twitter we use hastags: #hcsm
(healthcare social media) or #ptsafety(patient safety) to follow concepts or
chat sessions. This is usually
done in a very public way and most accounts are open. The stream of comments can be searched through google and
those who tweet should know that their writing could be seen by anyone. On twitter you can follow people who do
not follow you back. You can comment
to them directly by posting in the public stream. If you wish to say something privately you can send them a
direct message if they can follow you back. Direct messages are like short private emails between two
people.

Facebook is a wonderful tool for finding people. This platform is more closed. I have never been able to find a
facebook comment during a google search, though I can find the person and their
interests. In facebook, you can
communicate by including a friend’s name within your post and it will appear
publically on your wall as well as their own. This is a good tool if you know this person well and know
the message is very much inline with their life and mission. If you think it might not reflect their
worldview it is not considered appropriate to post it on their wall. If you wish to say something privately
a facebook message is used. A
message can be between two or more individuals but is not a public form of
communication. Copying the text
contained in a message and sharing it without permission is considered a breach
of trust. Please always ask
permission before sharing private messages with other people.

Your blog is your voice. The blog is an amazing tool. Here your can explain your stance in patient advocacy in
great detail. Unlike a website, it
is rarely static and very easy to update.
You can post links to your blog on both twitter and facebook. A lot of misunderstanding occurs online
when you do not have the space to explain yourself in full. A blog can give you the time and space
to be clear and if you enable comments you will get questions directly. Enabling comments will also help you to
understand the hard job of moderating comments, a challenge that facebook
administrators are well aware of.
Empathy is a good and valid teacher.

Writing in all
capitols in twitter or Facebook is perceived as screaming or yelling in this
space. If you served in the
military you may have written in all caps for clarity, but online this can be
very off-putting. It often
reflects badly upon the person who posts in such a way. There are many who will not read what
you have to say when you do this, so do it rarely, choosing a word or two for
special emphasis.

It may be called
SoMe, but it is really about us! In
social media it is crucial to listen and
share. Talking and posting is
important, but this relationship works because of give and take. It can be very off-putting to
other advocates if we post constantly about our own cause without focusing on
and sharing the content of other speakers in this space. It is very important to network our
messages with other advocates, providers and thought leaders. Look at the places you comment. If you are constantly redirecting
everyone to your own site and campaign, you are monopolizing the conversation.

You are creating a
monument to those you loved.
Remember all that you say in the world of Social Media reflects back on
you. It reflects back on your
loved ones as well. There
are often times I wish to “blow a gasket”
in this space. And as you well
know, I have, but this too with moderation. Do not become a flamer, for flames breed fire and fire
consumes all.

When I die, I would like my body to be donated to science or
burned. I do not want a
gravestone. If my family or friends wish to visit a grave they should visit
little Regina Roggow’s grave.
She died too soon and I hope in some small way I have lived for
her. The only monument I will ever
need is already being inscribed. It is crowd sourced and is the product of social
media. You can find it in the
google search field by typing Regina Holliday artist.

Remember when you post online you too are building your
monument or marker in this mortal coil, do so honestly and with dignity.

These were just a few thoughts upon this subject. I am a big believer in crowd sourcing
so please feel free to comment in the comment field to further expound upon
protocol in patient advocate social media.

Tuesday, July 24, 2012

Several times I have braved the sticky DC heat to trudge up
the street towards the headquarters to Health and Human Services (HHS). Currently there is a great deal of
construction in the area. Street
grit and dust assail those who arrive by the metro tunnel. It is very bright at street level and
everywhere I looked stark concrete reflected the summer sun. I walked up the street to the Herbert
H. Humphrey building that houses HHS.
It was designed in the brutalism style. The building is a white box with a repeated series of box
like windows. The grounds
surrounding the building are white granite and concrete. There is nothing of nature, no tree, no
grass: all is hard angular lines.

I walked through the doors and passed through security. The interior of the building is a classic
space with warmer friendly colors.
Here the dark wood counters and floors of polished granite welcome the
weary health enthusiast.

Beyond security is the Great Hall. This large open space was designed for change and the seating
is modular. High above large
portraits of the former secretaries of HHS loom larger than life.

I came to HHS this day because John O’Brien, Senior Advisor
of the CMS Innovation Center had emailed me an invitation to attend a National
Stakeholder Briefing on Health Insurance Marketplace/Exchanges. I took a deep breath and prepared
myself for the next 2 and ½ hours of what I would assume would be a lecture
about the Affordable Care Act.

I should have realized that this would not be a traditional
meeting when I was handed a CMS packet containing only three sheets of paper.

Let me repeat that: Three sheets of paper. That is quite odd.

I took my seat and then began to read my packet and
practically squealed in excitement!
Written under a CMS logo were words I knew very well!

“Rules

1.Whoever is there is the right group.

2.When it starts is when it starts.

3.Whatever happens is all that could have
happened.

4.When it’s over, it’s over

The Law of Two Feet

If you find yourself in a situation where you are not
contributing or learning, move to a place where you can.

THIS WAS AN AMAZING DAY! CMS WAS HAVING AN UNCONFERNCE!

I could not believe my lucky stars. The facilitator began
explaining this process was an open space technique and they would be using it
to discuss messaging around insurance exchanges. He then asked the crowd of two hundred if any of those in
attendance had experienced this process before. I raised my hand proudly as did about ten other audience
members.

He then asked for a volunteer to pitch their idea for a
session and place it on the board.
There was quiet for a few seconds and then I jumped up and went to the
front to grab the microphone.

“Hi, I am Regina Holliday and I am an artist who paints
about healthcare. I spent a great
deal of my life uninsured and I would love to speak about how we can use art to
reach people who are uninsured and need help.”

I then grabbed a marker and created the sign for my
session. People began to stand up
in the crowd and slowly come forward to propose sessions and in about ten
minutes the board filled. Then we
began to rearrange the chairs in the room in order to create session space. I
went over to my session space to wait for our group. Four people showed up. I know full well the rules of an
unconference: “Whoever is there is the right group.” I quite enjoyed the
conversation in our small group.

The next session I attended was about the role of the Church
in helping folks understand insurance exchanges and there were about 20 people in the group. So in case you ever wondered at CMS talking about Art is
scarier than talking about GOD.

The session on religion was great and was facilitated Lisa
M. Carr, Associate Director of Faith-Based and Neighborhood Partnerships. We had a wonderful group full of
diverse perspectives. Some people
worked for CMS, some in advocacy and we even had a Reverend in the group. We talked about Men’s Ministries, the
importance of messaging from the Pastor and the different neighborhood groups
that can be reached by one Church body.

All too soon it was time to place our chairs in a circle and
report out. A few people stood and
expressed their excitement using this new method. I spoke out too saying how happy I would be to tell patient
advocates that CMS used this disruptive form.

Before I left, I gave John a big hug and thanked him for
inviting me. HHS maybe shaped like
a big brutal box, but the people who work there are thinking outside of it.

Monday, July 23, 2012

When I was a young teen I went with my little sister
Esther to get my ears pierced at Claire’s Boutique in the local Mall. If you are not familiar with Claire’s Boutique
it is a shop filled with hair accessories and very affordable earrings. I remember the young shop girl who pierced
our ears. She held up a tool that looked
like a pliers. She explained that she
would be placing “studs” in our ears.
These earrings were gold plated and would be locked in place for the
next six weeks. We would need to clean
our ears regularly. After six weeks our
ears should heal and then we would be able to wear other earrings they
carried. She followed up saying
sometimes certain clients did not respond well to metal in their ears. Those
clients would need to stop wearing earrings or use gold earrings only. After telling us all these things she stapled
our ears.

My ears swelled and bled.
The next six weeks were very painful.
My ears were warm to the touch. I
was one of those clients who could only wear gold. Gold earrings are quite expensive, so over
the years I would try to wear the fashionable earring labeled “surgical steel.”
Within minutes my ears when begin to swell and bleed.

I thought about this experience in the years I have been a medical advocate I have spoken to
a great number of patients who have had medical devices implanted in their
bodies. A few of them have suffered a
great deal. They complain of a deep
tissue itch, swelling and pain. I asked
them if any of their doctors explained potential allergic reaction as well as
the shop girl did at Claire’s Boutique.
They all said no. There had been
no warning, no discussion. Now they suffer with little recourse.

There is an patient champion who has made advocacy in this
field her life’s work. Joleen Chambers
blogs under the title FIDA: Failed Implant Devices Alliance. She became part of the patient advocacy
community after spending years speaking for her brother as he suffered in
anguish due to a failed implanted elbow.
He was placed on a long term maximum dose of pain medication. Joleen began speaking out as she became aware
of all of the patients who were suffering with failed implants who could not
find surgeons to repair the damage done.

A year ago Joleen joined the Walking Gallery when she attended the
Patients 2.0 session day at Health 2.0 in San
Francisco. I
finished her jacket there at the event. This
is a jacket for Joleen Chambers, “Spare Parts.”

This jacket is framed by a scene from Doctor Who: a
brilliant British science fiction television program that her family enjoys as much as mine. This image
is based on the first scene in the first episode of the program. This is a scene in a junk yard. The classic blue police box is surrounded by
so much junk and perhaps is considered junk itself.

In of the darkness, patients seem to be scrounging through
the bins and piles of derelict parts. If
you look closely at these patients you will see large wounds at the joints of
their body. Metal hip joints and
shoulder joints are in bins. The
patients paw through the open bins in the hope that they can find a part that
will replace the broken a failed part inside of them.

I thought this a perfect image for Joleen. I am sure there are many who look at this
jacket and do not think it a serious image, just as many people don’t take
failed implantable devices seriously. Joleen has a hard long battle a head of
her. Recently she submitted an essay to
Mayo Clinic for Social Media Scholarship Essay Contest. She is asking all of us to like her essay or tweet it so she can be a finalist in the competition.

I urge you to do so. She works very hard in field shrouded in darkness much like the scene of her jacket story. There is very light in this painting, but light is comes from a smart phone and a person willing to tweet injustice.

Wednesday, July 18, 2012

Once upon a time a poor man entered a village and asked if
the villagers had any food to spare. The villagers said no. It had been a hard
winter and each family was hoarding what little they had. The village was small
and the man was strange so though they would not help him, they began to watch
him. Perhaps he would leave if no food
was forthcoming or perhaps he would try to steal. The man did neither of these. He merely gathered
firewood and built a fire. He put his
cooking pot in the stream and hoisted the water-filled pot to his fire. Then while all the villagers peered around
doors and out of shuttered windows, the man made a big show of searching for
some rounded large stones in the stream.
He exclaimed upon finding each one. He rubbed them on his worn tunic and
praised their color and delicious odor and then tipped them into his pot.

The villagers were quite intrigued by his actions and slowly
found reasons to walk past the stranger’s fire. As they would pass he would run
a spoon into the water and state that his stone soup needed a little
seasoning. If only an old withered
carrot or bit of potatoes were available it would be an excellent soup. As the villagers returned to their cottages
they would ponder the man’s words and realize they perhaps had something to give. Each in turn began to offer a bit of this and
that. He would exclaim his appreciation
of each ingredient. The villagers were a competitive, yet caring lot and seeing
their neighbors praised encouraged them to give even more. As the day
progressed the pot became thick and hard to stir.

The stranger soon told the milling crowd the soup was
perfect and ladled a generous helping of soup into everyone’s bowl. All ate well that night filled with sustenance
and camaraderie. Everyone praised this
new recipe called Stone Soup.

So how does the stone soup method apply to my work medicine?

I don’t know if you have seen me paint at a medical
conference but I often think of the stranger in this tale as I paint. When I enter a room, I come burdened with
blank canvases and a heavy easel. People watch me set up my station intrigued
by an artist painting at a conference.
As the conference day begins my canvas is blank then slowly the words of
the speakers and attendees fill the air and I begin to paint. Soon the attendees come to the easel and
share their thoughts and feelings. My
painting fills with imagery just as the stranger’s pot fills with food. It is an amazing process.

In a little over two months the Partnership with Patients Summit
will be held in Kansas City
and we will be using the stone soup model. We will have a gathering of the Walking
Gallery, a traditional conference day and an unconference day. People who self-define as patient/patient
advocates will congregate with partners.
The partners could be providers, techies, venders, academics,
organizations or health policy wonks. We
will gather together to make a conference with everyone throwing something into
the pot. There will be a non-profit partner,
business partners and regular people creating a crowd-sourced and crowd-funded
conference.

The idea of a stone soup/crowd-sourced conference has confused
a few people. We are once again practicing
some creative destruction of the traditional form. This event is not funded by CMS Partnership for Patients, yet we are reporting back to them and focusing on their goals. This event is not organized by a non-profit,
though the Society for Participatory Medicine has agreed to create and oversee
a travel fund to help patients attend medical conferences such as this
one. Cerner is hosting us in their space
and acting as a partner, but this is not a Cerner conference. This is a patient summit; and I may be
stirring the pot, but I am one of many around the fire.

The Venue

Cerner has graciously offered to provide the “cooking pot”
for our conference in the form of their Riverside
educational building. This once was a
casino many years ago, and is a rather appropriate venue to place a bet. We are betting that we can do much if we just work together. The
building has been retrofitted with rooms and technology that supports
educational opportunities. You can register for the conference on eventbrite at
Partnership With Patients and ticket proceeds will pay for the overhead costs. The overhead cost will include food, transportation,
shuttles and conference materials.

Travel Scholarships

I asked the Society of Participatory Medicine if they would consider being our non-profit partner whose responsibility would be to create a patient travel scholarship fund. The board agreed that this was a good use of their energy and was in step with their mission. They further added they would like to create such a fund and continue to solicit funds for future conferences. Please send donation checks to The
Society for Participatory Medicine PO Box 1183Newburyport,
MA01950-1183. Please make checks payable to the
Society for Participatory Medicine and mark in the memo line "Travel Fund.".

Or you can donate online at the donations page, just click on the Travel Fund button. The Society for
Participatory Medicine is a 501(c)3 public charity. They will present a panel discussion during
the conference explaining the concept of the society and participatory
medicine. For the Partnership With Patient Summit they will be offering a limited number of $500 travel grants. The quantity they will be able to offer will be based on donation amounts they receive. Those who wish to receive such grants will write an essay explaining their need. Grantees will be chosen based on review by a committee from the Society.

I am asking you today to please donate to this fund. No amount is too small. Everything is appreciated. If you are able to give more that is wonderful.

The Walking Gallery

On Friday night September 21st, we will have a Kansas City gathering of The Walking Gallery. This will take place at the Kansas City Marriot. I will be asking for financial support to cover expenses for this venue on Medstartr, a new funding model created by Alex Fair.

The Traditional Conference Day

On Saturday the 22nd of Septemeber we will have a conference day that will break
into three tracks focusing on HIT, Patient Quality/Safety and
Media/Message. These sessions will be taught
by many different individuals who are volunteering their time and are leaders
in their fields. I will post the full
agenda as it forms.

The Unconference

Mark Scrimshire and Maumi J.Cannell Chatterton will be hosting
a HealthCamp KC unconference on Sunday the 23rd. That is the ingredient they are adding to
this stew of advocacy.

Speakers Boot Camp

Simultaneously, patient speakers will be given the
opportunity to present 5 minute speeches during a patient speaking session.
These speeches will be recorded by Cerner staff and uploaded to youtube. These speeches will be a great asset to
beginning speakers who have just joined Speakerlink.org and are building up
their online presence.

Many other folks have offered their time and skills to help
this process. As they send me their
offerings I will post them here, but suffice to say we are making a lovely
dish.

By the way the hashtag for this event on Twitter is #cinderblocks. It rather fits doesn’t it? When making a stone
soup, you must begin with stones.

And this story began many years ago when a little girl was in a class without books shelves...

When I was a child I went to an elementary school that had few resources. In fifth grade our class was donated a large amount of books. We were very pleased to have them, but we had no bookshelves on which to place them. My teacher was very enterprising though, and she contacted the local lumberyard and requested they donate some two by fours and cinder blocks so we could make shelves. The lumberyard manger said yes with one caveat, we would have to pick up the supplies.

That year our fifth grade class had a field trip.

We left the school as a class with our strong backs and eager minds. We walked to the lumberyard. Some of us grabbed the two by fours, some of us cinder blocks and some us combined the two to make a carry yoke for two students to heft. We walked those blocks all the way back to school and up three flights of stairs. Then we assembled those shelves and placed the books upon them. We stood back and looked proudly at our work. I cannot believe there was a class anywhere else in the entire nation who cherished their bookshelves as much as we did ours.

We loved those shelves because we overcame adversity and made that which we needed. It wasn't pretty, it wasn’t perfect, but it was ours.

What if you were alone and suffering? What if it felt like
no one understood your pain and the people had turned their backs to you? Then
suddenly a window opened and a blue bird tweeted about a new tomorrow. You found there were others like you
all over the world. Others like you trying desperately to reach out and become
friends.

What would you do to make that vision a reality? I know what Afternoon Napper did. She tweeted, she blogged and most
recently she began asking for our help on Medstartr. She needs to raise $5,000 dollars by September 7, 2012 to
help achieve non-profit status and host a retreat to help individuals who share
her rare disease: FMD. “Fibromuscular dysplasia is a
rare, noninflammatory, nonatherosclerotic arterial disease that occurs most
commonly in women and presents most frequently in the renal artery. FMD may cause arterial stenosis, occlusion, aneurysm, and/or
dissection; however, many patients are asymptomatic and may remain undiagnosed
or receive diagnosis as an incidental finding, “ explains Afternoon Napper.

But who is Afternoon Napper and what is in a name? Some
patient advocates have embraced their name as banner representing patient
rights. Google Trisha Torrey or my
name and post after post will appear focusing on advocacy. You can find us simply on Twitter just
using our names. Whereas, some
advocates are known by a handle that defines their name. @ePatientDave is the
more often used to address Dave deBronkart than his given name and many times I
have seen Sherry Reynolds greeted as @cascadia in person. These names may seem whimsical, but
within my mind I know Sherry is cascadia and Dave is ePatient Dave. When I painted their stories I knew
them as one person with many names.

I met Afternoon Napper on twitter. She has a brilliant voice that slices through the
often-mundane platitudes that flow through the twitter stream. I offered to paint her jacket for the
Walking Gallery based her concise and powerful 140 character tweets.

I did not know her name.

I knew she supported the rather controversial idea that it
was okay to sleep when you are tired.
Quite a few advocates have spoken out online that a lack of sleep is the
only vice still acceptable in health circles. It is not okay to drink to access, eat to access or smoke,
but no one bats an eye when one of us admits that we are functioning on less
than four hours of sleep. As
matter of fact, we are rather proud of the accomplishment. Our society supports such behavior as
evidence of a strong work ethic.
Anyone who naps must be very sick or is a very small child. God forbid you admit you admit to
taking a nap in the middle of the day.
I have an adult friend who has commented on her Facebook feed that she
planned to take a nap, only to be attacked in her comments field by her friend.

The floor of this painting is a sky’s reminiscent of Van
Gogh. In January, Sarah
recommended I read: “Lust for Life” a biography of Van Gogh that depicted the
extremes of elation and despair that this artist experienced. Sensing that Sarah understood a great
deal of the anguish of Van Gogh, his artistic style is foundation upon which
the Sarah’s stand. She even wrote to me about the book saying, ”In Irving
Stone's biography of Vincent Van Gogh there is a line that reads, "Many
times in your life you may think you are failing, but ultimately you will
express yourself and that expression will justify your life." It was years
ago that I first came across this maxim, and it immediately halted my reading
and jolted my heart. There is no other quote that has resonated so deeply
within me and continued to do so."

The composition of this image is defined by its Dichotomy.

To the right of the painting is Sarah the patient. Her back is turned to the viewer. She is an unknown quantity suffering
from a rare disease. Sarah
has FMD. Sarah has endured surgery
after surgery in her short life. She
has lost some sensation on her right side, her vision is affected and her body
is laced with surgery scars from bypass surgery, kidney removal and a stomach
rupture. This patient Sarah leans
upon a wall.

The Sarah to the left wears a wedding gown. She is married to her disease. She has embraced her life defined by
pain and has taken a new name: Afternoon Napper. She is beautiful in this role. Her hair is upswept like many a bride. She is empowered and taking charge of
her life and making friends.

In the center of this piece is a chaise longue. This couch is the méridienne:
the word referrers to the midday nap, the midpoint or midday. Upon this sleeping couch a woman
lounges. She is the FMD girl: the
avatar image of Afternoon Napper and she holds the heart from FMD Chat in her
small hand.

Behind her a window is open and a twitter bird twills
a greeting. “Join us,” he says.

We have often
joked with @afternoonnapper on Twitter.
What is her real name? What
does she look like? I threatened
to out her in March for the Sarah that she is. This morning I awoke to a wonderful post from Afternoon
Napper on Facebook and it was saying “This is me.” The article was entitled “NC Woman’sRare Disease Prompts an Uncommon Response.” The article focused on Sarah and her new project on Medstartr.

I am happy to see Afternoon Napper/Sarah become one
amazing person. Today I proudly
logged onto Medstartr and supported her cause. I would ask all of you to consider doing the same. If everyone who followed Sarah were to give $5 dollars each, Sarah would reach her goal. That is such as small price to pay for all she has given us.

Thursday, July 5, 2012

There are a few members of the press who are also members of
the Walking Gallery. Over the past year I have asked many to join us in this movement, but there are those who
feel they cannot. Some seem afraid to
share the power of their story. Some feel constrained by the rules of their
profession. The latter reason is used by
many in the press to explain their inability to join us.

I always respond, “It is your story.” Being a member of an unbiased press does not
deny you the right to speak about your personal life. I am glad Don Fluckinger decided to join the
gallery and tell us his story. Sadly, on
June 4th when we gathered in DC, I did not have his jacket painting
finished. He spent that night wearing a jacket I quickly emblazoned with the
downloading spinner and the written word “downloading.” Quite a few in the crowd chuckled at Don’s
endlessly downloading jacket.

Don is a reporter with SearchHealthIT. He writes articles and interviews people who
work within the world of health policy and HIT (Health Information
Technology.) Much of the content that
Don must parse is a heady brew of legislation mixed with vender confusion. Don creates clear and concise articles for
CIO’s and CMIO’s to understand this labyrinthine tangle of law and
commerce. I can attest that his writing
is nuanced yet clear and even a data access artist can enjoy the content. Don reminds me of a baker, folding one dense
ingredient into other lighter elements until a consistent tone is reached.

But Don is more than his writing; he is a father to a
wonderful boy. Don’s son Patrick is what some
would term twice exceptional; he is very smart but has some processing issues. Up until quite recently Aspergers Syndrome
was the clinical term used to define him.
This term will soon be folded into the broader autism spectrum disorders
heading in the new edition of the DSM (Diagnostic and Statistical Manual of
Mental Disorders). Many in the Aspergers
community are quite upset by this change.
They had been labeled by others, yet had come to embrace their
difference and their title, often calling themselves aspies.

Patrick loves to fold origami paper into intricate
designs. He has even created a little
origami garden for his father’s desk. So
within this painting Don holds an amazingly complex origami shape known as a
truncated icosahedron. Patrick cannot
fold this yet, but he is already trying.
If you look at the center of this mass of folded paper you will see the
letters DSM. Here is an image of autism
spectrum disorders defined in paper; it hard to see which paper folds press in
and which out. Only one thing is clear about this bright shape as it folds in
upon itself: it is labeled DSM.

Below father and son an origami paper airplane flies, for
Don himself has a title within the DSM.
Don, the brilliant reporter that I have spoken with in cities throughout
our great nation, is afraid to fly.
Every time he boards plane he fights against himself and his own anxiety. I have always appreciated my conversations with
Don, but now I doubly cherish them knowing the stress he experiences every time
he flies.

A message flutters behind the origami plane. Upon the billowing streamer is one Japanese character:
“to fold.” Folding is such a powerful word
in our world of HIT. Does it refer to
that amazing crowd sourced protein folding project: Foldit? Or perhaps folding refers to the demise of many
start-ups Don and I have seen in the last three years at health tech events. Does
folding represent the future of paper?
Are we heading into a world where paper is prized more for its ability
to hold a three dimensional shape, rather than a thought?

Or is folding something one little boy does really well? Perhaps we do not always need words to send
messages on paper. Sometimes the shape
of itself can speak louder than any spoken word or bold font. Sometimes the folding itself can say I love
you.

Tuesday, July 3, 2012

You see them in airport stores and kitschy roadside
attractions. They are the standby of the
hurried traveler: the simple snow dome. Snow domes always amazed me as a child. I loved the magnified wonder of the little plastic
diorama scenes. Some of the domes would
replace the proverbial snow with glitter instead. Glitter swirling in the air of these magical
scenes seemed perfect.

When I was young we would go on family vacation road trips. It seemed that virtually everywhere stopped,
the little domes were sold to commemorate a town no matter how small or insignificant
it seemed. It was as if within the still perfect plastic scene there was a
feeling of importance. This feeling went
beyond that bright welcome of the post card rack with it endless paper cascade
of florid cards saying “Wish you were here!”

The dome offered more.
It offered the trespassing tourist a glimpse of how a people saw
themselves. The town may be small, the
roadside attraction may be kitsch, but to those that lived here this was home
and it was beautiful. As a child, I
could not resist the temptation to shake the globe and watch the snow or
glitter swirl in tornado’s fury of motion. Yet nothing was destroyed within the
magnified dome. All would settle
peacefully, and I would leave the dome upon the store shelf.

Do you know Angela Lynn?
If you read her LinkedIn profile you might think you just read the
resume of a saint or a superhero. She was
a program director for women and children in a domestic violence shelter, she
was a coach, a special needs teacher, a pilot, a volunteer liaison for Red
Cross disasters and her current job is working for FEMA.

This is Angela’s jacket “Greetings From Your Town, USA.”

In this painting Angela stares at the viewer. Her face is ageless, beautiful yet-time
worn. She has seen so much. Angels gets the call and travels anywhere in
the United States
after a disaster. She has dealt with the
immediate aftermath of floods, tornadoes, hurricanes, fires, pandemics and
earthquakes.

She has no idea what the place will look like when she
arrives, but she knows it will not be the pristine image seen inside a snow dome. She will see faces twisted in sorrow and
grief, people beaten down by stress.
Some of the people she encounters will be angry and explosive; some will
be quiet with a silence inspired by shock.
Some people will pitch in, constantly helping as volunteers.

The first days and weeks after a disaster are heady, the press
descends and many of those who toil are working fueled by pure adrenalin. But then the weeks pass, and the excitement
turns into a depressive state as people realize things will never be the
same. The press leaves, yet homes and
dreams are still shattered.

Angela watches this whole cycle of disaster again and
again. She holds the hands of the elderly
and the new mothers. She goes through
forms and explains the system while trying desperately to provide aid. Sometimes she finds there is no FEMA help available,
but she tries to unite those in need with services that can help them.

And when the time comes to leave, Angela must fly away from
a town still reeling. She is the visitor
who only gets to see the dreadful after.
She hopes that those she left will see a better tomorrow. She hopes the picturesque
town inside the dome will live again.
She carries back all she sees to her home and family. She does not take for granted a warm bed,
safe food and funds within her bank account.
She does not take for granted the friends she has and life she lives. She knows too well at anytime this life could
shatter.

She knows in a moment the dome could crack and shatter in
your town, USA. Then the phone will ring and Angela will grab
her bags. She will do her best to help
those who lost all they had. She will
look into eyes drained of all their sparkle just as assuredly as a little
broken dome.

Monday, July 2, 2012

I leaned back into his warm torso. I placed my hands upon my taunt belly and
took a deep breath. I felt the breath
deep within, centering me, supporting me.
Then I let it go. I was preparing
for the time to come: birth, new life and the pain of it all. I knew I could make through. The instructor said concentrate on the
breathing.

My body had changed so much in these many weeks. My torso swelled, I was retaining water and
could no longer see my ankle bones.
Walking was hard, breathing was hard, but through it all he stood beside
me. Soon the baby would come and I would
get my body back.

The Lamaze class ended and the gaggle of pregnant women
and the cluster of husbands would mutter in an excited anticipatory way. We were walking this path together and everyone
could relate. I read pamphlets and books
that would cover every detail of this exciting adventure. I was familiar with terms like contractions, dilated
and active labor. If I tired of reading,
I could question our Lamaze instructor or my OBGYN. I could ask my neighbors, friends and relatives
about their birth experience. I didn’t
even have to ask, folks constantly would tell me their stories unsolicited.

We planned the natural birth of our first son. Little Freddie came one month early so we
missed the final Lamaze class, but we had learned enough. When labor came Fred held my hand and we breathed
together. He looked deep into my eyes
and we breathed through the pain. He smiled at me and said, “There see, it is
not so hard, just take a deep breath and let it out.”

Ten years would pass us by.
Ten years of bills, work, scraped knees and sweet smiles. Ten years of moments not appreciated until
they have passed us by. Through ten
years of joy and sorrow, I never forgot the most important lesson: Concentrate
on breathing. Close your eyes and take a
deep breath and let it out.

So many people want to talk about how we are born, but very
few want to talk about how we die.

Colleen Young is a community manager of Virtual Hospice of Canada. I met her on Twitter and I think of her as a type of Lamaze instructor for death. I see her frequent
caring comments on end of life and cancer care.
I know she is kind and informed.
She is far away, but she can offer so much support online. When she said she would like to join the Walking
Gallery I knew what I wanted to paint for her.

This is Colleen Young’s jacket: “Virtual Hospice.”

It is very hard to die in the world of modern medicine. Patients are lost within a system based on
curative models. Dying is considered failure rather than a natural conclusion
in life. When a family makes the decision
to go into to hospice care, many people just stop talking with you. There is even a steep drop off in cards. What are people to do? Gone is the endless stream of “Get Well Soon!”
cards inscribed with that most empowering of notes, “You can beat this!”

There are no hospice cards.

The mailbox is often empty, both online and in life. This is that quiet before the storm. The
lonely solitude before the mailbox fills again with sympathy notes. Into this utter darkness a cursor
blinks. It is Colleen and others like
her answering end of life discussion group questions both metaphysic and
mundane. Here is this space we can learn about active death and its symptoms
just as easily as I once learned of active labor.

Within this painting is the Archangel WiFi. The angel stands above my husband and me, for
through this signal we can find someone to talk with us, someone who can
explain this scary journey. In my hands
I hold the I-pad I needed at that time picking up the signal not available when
my husband was ill.

Fred came home to die after three weeks in inpatient hospice. I sat beside him as his hands fluttered and plucked
at his gown and blanket. His body had changed so much in these many weeks. His torso swelled, he was retaining water. I could
no longer see his ankle bones. Sitting
up was hard, breathing was hard, but through it all he smiled at me.

Soon it would be over.

His hands were placed upon his taunt belly. He took a deep rattling
breath. I felt his breath deep within,
centering me, supporting me. Then I let him
go. He was preparing for the time to come: death, new life and the pain of it all.
I knew he could make through.

I smiled at him through my tears and heard his words from
long ago, “There see, it is not so hard, just take a deep breath and let it out.”

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."